Children with complex disabilities who for years have been housed in nursing homes in South Florida could be able to return to live with their families as a result of a civil rights lawsuit.
The suit, filed by the Justice Department against Florida health regulators a decade ago, finally went to trial last month. It argues that the practice of institutionalizing medically fragile children in homes for the elderly violates the Americans with Disabilities Act, and seeks to push the state to create conditions which it argues would allow for families to be able to look after them at home.
WLRN’s Tim Padgett spoke on the "South Florida Roundup" with Carol Marbin Miller, the deputy investigations editor at the Miami Herald who is following the trial and has done eye-opening reporting on the living conditions of these children.
“I don't doubt that it is possible for almost any family to take their child home and care for her or him within their family,” Miller said. “And that's what these kids want. Nobody wants to grow up in an institution. Nobody.”
U.S. District Judge Donald M. Middlebrooks now looks set to order Florida to remove 140 children from nursing homes in Broward and Pinellas counties.
The ADA prohibits discrimination against people with disabilities and requires governments to make accommodations to provide them with the least restrictive setting. The U.S. Supreme Court also determined that it is unlawful discrimination and a violation of the act to basically force people with disabilities to live in institutions.
“Florida believes in saving money,” Miller added. “Florida has been rationing care for people with disabilities for decades and when the federal government came in and said ‘please stop this practice,’ Florida's reaction was basically ‘mind your own business.’”
In Miller’s reporting she found that some of the children spend most of their time in cribs or beds and may occasionally leave to sit in wheelchairs or the hallway. They watch television and a few of them have a full day of education, although parents whom Miller has spoken with said their kids’ education consists of between 30 minutes to an hour a day.
“Children need to have stimulation in their lives,” she said. “They need to have enriching and developmentally appropriate activities, but so many of these kids get absolutely none of that.”
Miller reported that when Dr. Allan Greissman — who serves as a critical care pediatrician at Joe DiMaggio Children’s Hospital in Hollywood — was testifying for the state, he said that many children who live in nursing homes are too frail to afford to live outside long-term care facilities. He added that many are also neurologically devastated, which prevents them from being able to feel the joy or comfort of living with family members.
“Experts who were hired by the federal government dispute that contention and … contend that very few of these kids are, in fact, what is called a persistent vegetative state,’” Miller said. “Even children with profound disabilities are able to experience joy in companionship and the comfort of a family.”
The trial raised concerns about Florida’s lack of private-duty nursing. That leaves many parents without an option to provide adequate in-home care, forcing them to keep their kids institutionalized.
“In one of the court files a family finally was able to get their kid out of a nursing home and the day that he was leaving, they had a goodbye party. The family got out of the home into the parking lot and they got a call saying the nurse quit before they even got the kid home,” Miller said.
“And that is the biggest problem these families face — [it] is getting money for and then accessing in-home nursing care.”
